Make a Donation to my local Special Education PTA, SEPTAR!

Thoreau

I went to the woods becauseI wished to live deliberately,to front only the essentialfacts of life, and see ifI could not learn whatit had to teach, and not,when I came to die,discover that I had not lived.I did not wish to livewhat was not life,living is so dear;nor did I wishto practise resignation,unless it was quite necessary.I wanted to live deepand suck out all the marrow of life,to live so sturdily and Spartan- likeas to put to rout all that was not life,to cut a broad swath and shave close,to drive life into a corner,and reduce it to its lowest terms,and, if it proved to be mean,why then to get the whole andgenuine meanness of it,and publish its meannessto the world;or if it were sublime,to know it by experience,and be able to givea true account of itin my next excursion.

09 November, 2012

I have come to believe that I perhaps I live a life of luxury, if for no other reason than the fact that I no longer iron my husband's shirts, or mine very often any more. We take them to the cleaners. That one thing makes our life so much simpler, removes the hazard of falling irons on little children, and adds hours and hours to my weeks. I am a lucky woman.

But there is something to ironing a shirt. The precision, the care, the time it takes. makes me focus for just a little bit on nothing, and everything all at once. I pulled out the board this morning, heated up the iron, adding water to make steam puff about me as I lay the shirt across the smooth pad. I thought I would just hit the collar, maybe the front placket with a small amount of care, and I could be on my way.

Then I saw that the yoke was a little funky, so I ironed the collar, back then front, and tugged the yoke around the tip of the board first one shoulder then the next. As I was flipping the shirt, attempting to go straight for that front button placket I saw that the sleeves really didn't look very smooth at all, especially where they met with the now ironed yoke, so then I did the sleeve, and the other, and by the time I finished those sleeves, I had decided to just finish the entire shirt. It is now pressed and hanging in my closet. After all that I wore something else today.

Some people will never iron. They will pay someone else to do it, they will wear different kinds of shirts, their parents will iron their shirts for them, they will wear a uniform that comes ironed from their employer. Or they will live somewhere or have a trade that means that ironing will never occur to some people at all.

As much as ironing a shirt appears to have a begininning, a middle and an end, there's really always some little piece that can be touched up, or something that gets wrinkled as you unwrinkle another part of it. It is a battle where no one wins or loses, truly, but at some point you must just tell yourself to stop, and be done with it. There is a brief period of satisfaction after it has been ironed, but before it is worn, when the shirt hangs there, on the curtain rod or the back of the door, or off the ironing board itself, when it looks like everything is 'set.' It feel like preparations have been made, and the weapons for battle have been assembled. There is a confidence standing there in front of the shirt that you have completed something, at least this one time, completed the task, and you are now fully prepared for whatever comes next.

Of course the whole point of ironing the shirt is to have it look good on the person who is wearing it. But no matter how crisp the shirt, how perfectly creased the lines from shoulder to cuff, you cannot change the person who wears it. No amount of starch can build a backbone, or infuse a trodden mind with fortitude, even as it might be able to hide your indifference, because an ironed shirt does somehow say that you tried, that you care, just a little.

The irony in ironing a shirt at all, is that no matter how perfect it looks, how well it drapes across the shoulders and smoothly lays down the front of our chest, the minute you go back to "life" with its demands to sit, or stand, or wear a jacket, or get in a car, or hold a baby, or comfort a friend with an arm about their shoulder, or give a kid a deep, deep pressure hug so they feel safe and grounded... life will make that shirt wrinkly as if it had never been ironed, never been slaved over for some number of minutes to make it look just right. All of your work will immediately be undone and though you did what you needed to do, you will not be able to make the shirt look as smooth and unhindered as it was just hours before.

At the end of the day, the ironed shirt, with all of the ways it was used as you went through the paces of your life, the shirt will just be tossed right there into the laundry basket, along with undershirts and underwear, and dirty socks, and pillowcases. There will be no distinction for the shirt just because it looked better than the other garments at some point of the day. No special place of honor just because it started out with special treatment. When it comes down to it, it will be dirty at the end just like all the rest.

And then it will be waiting to be washed and worn another day. Any time you want to start all over again.

01 November, 2012

For the most part, most people, would say that my son is non-verbal. That is a clinical diagnosis. I use the term when I am explaining his needs to a caretaker or an education professional. I hate saying it though, not in the "we should use the term pre-verbal instead of non-verbal," but more in the way of, "I can't believe that people don't actively recognize that there are many, many ways to communicate."

Jake has a lot to 'say.' He has opinions, and finds things funny. He has preferences. He shows varying amounts of affection depending on who you are. He wants to go some places and not others, and can tell by where we are driving if we are getting close to camp, or home, or the Lake House, or Tahoe. He is clear about when he is done with a situation. And he has all of this without being "verbal."

The more we interact with Jake as if he does have something to say, to no one's surprise, he does have something to say! Treating him with that respect, is uncomfortable for some people. Without the feedback that he has heard you and with no verbal response to gauge when they should begin the next bit of story or query, even well-intentioned people can feel like they are dangling there, unsure of how to move the conversation. Those people who do address him directly in conversation, however rare that is, even those conscientious people wait for an answer from him. They, we, the world, talks at him. And then they talk to me about him, in front of him.

Some of it is just going to happen because of logistics, or pressing need, or the fact that he is still a young boy. Some of it happens in the exact same way with my daughter who is filled with words that spill comfortably out of her mouth. Talking about your children in front of them happens, and giving an answer for your kid probably happens more than it should. Truly we are just an impatient society, always ready to jump to the next thing; get the answer, move on.

But we can "listen" for Jake's responses if we pay attention, and I should do a better job of explaining some of the ways he communicates, at the very least, so others can benefit from his humor.

We've never done this before, so I am still learning. Certainly my feelings have changed over the years from just wanting my son to talk, and thinking that saying words aloud was the end game. Now I understand that the really important thing is that Jake be able to communicate his needs. It doesn't matter how he does it. Maybe there will be a device, like an iPad, that helps him string words together so we can easily read them. Maybe he will use more gestures. Regardless, I no longer think that there is only one way to "talk" and I realize that really listening requires a more open mind.

***

Last night was Halloween, and we had planned to trick-or-treat through the neighborhood with a group of friends with Jake walking a little, then using his wheelchair. We would be accompanied by his aide. Knowing that he gets tired earlier than a lot of kids, we already had a built-in escape plan for Jake, with an early departure via car should he want to go home with his aide.

We got the kids ready in their costumes, and as I was gathering the rest of the items we would need, flashlights, bottles of water, extra bag, lightweight jackets, Jake whooped once then ran down the stairs, in full costume, and got into his bed.

Face down in the pillows I went to talk to him. I explained that he would not be in trouble, and no one would be mad if he decided not to go out house to house. I waited, sitting there, then offered that if he did want to go, he needed to get up with me now because we had to meet people, and that the decision was his. Perched on the edge of his bed, I waited, watching his back rise and fall calmly as he breathed.

All at once he sat up in bed, so precious in his Star Wars get-up, and looked at my face for a moment. Then he flopped back down on the bed and buried his head under the pillow.

Okay. Got it. No trick-or-treating.

As his sister and I left the house his aide was helping him into more comfortable sleeping attire, and I heard a familiar, happy squeee and the sound of the headboard hitting the wall as his almost teenager body slammed back onto the mattress. Reports are that he was sound asleep within ten minutes.

In the past I would have a) gotten him out of bed and walked him to the car, 'encouraging' him to participate in this annual ritual that American children cherish, or b) allowed him to stay at home, but walked away feeling like I was somehow cheating him by not including him in the outing, and no matter what I would have c) felt guilty that I was forcing him to do something, or felt guilty for abandoning him (and ultimately making my night easier, because most of the world is really not ADA accessible, so wheelchairs and Halloween do not go together very well.) In the past, I would have decided what Jake would be doing based on what I felt was the best decision, calculating everything from my point of view.

Instead, I left the house confident that he made the decision. I asked him, I double checked, I waited for an answer. He told me clearly what he wanted to do...and then I honored his wishes without attaching any frustration, or blame, or guilt, or sadness.

His communication was very clear. He didn't need to spew a soliloquy for me to hear him, I just had to know that he had something to say.